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TO TREAT AND CURE FRIEDREICH'S ATAXIA (FA) BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS.
Source: IRS Form 990 (Tax Year 2024)
Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2024
Total Revenue
▼$13.1M
Program Spending
94%
of total expenses go to program services
Total Contributions
$13.5M
Total Expenses
▼$13.3M
Total Assets
$6.9M
Total Liabilities
▼$676.2K
Net Assets
$6.3M
Officer Compensation
→$352.5K
Other Salaries
$1M
Investment Income
$172.3K
Fundraising
▼$648.8K
Tax Year 2024 · Source: IRS Form 990, Schedule I (Grants and Other Assistance)
Total grants awarded: $7.1M
| Recipient | Location | Amount | Type | Purpose |
|---|---|---|---|---|
THE BROAD INSTITUTE26-3428781 | CAMBRIDGE, MA | $1.9M | Cash | MEDICAL RESEARCH |
| PHILADELPHIA, PA | $713.9K | Cash | MEDICAL RESEARCH | |
| PHILADELPHIA, PA | $500K | Cash | MEDICAL RESEARCH | |
UNIVERSITY OF FLORIDA59-6002052 | GAINESVILLE, FL | $359.2K | Cash | MEDICAL RESEARCH |
REGENTS OF THE UNIVERSITY OF MINNESOTA41-6007513 | MINNEAPOLIS, MN | $339.6K | Cash | MEDICAL RESEARCH |
MASSACHUSETTS GENERAL HOSPITAL04-3230035 | BOSTON, MA | $314K | Cash | MEDICAL RESEARCH |
UNIVERSITY OF MASSACHUSETTS04-3167352 | BOSTON, MA | $300K | Cash | MEDICAL RESEARCH |
WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY13-1623978 | NEW YORK, NY | $274.9K | Cash | MEDICAL RESEARCH |
STANFORD UNIVERSITY94-1156365 | STANFORD, CA | $250K | Cash | MEDICAL RESEARCH |
VESIGEN INC84-2449757 | CAMBRIDGE, MA | $204.1K | Cash | MEDICAL RESEARCH |
THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGO95-6006144 | LA JOLLA, CA | $194.8K | Cash | MEDICAL RESEARCH |
STEALTH BIOTHERAPEUTICS INC26-1512085 | NEEDHAM, MA | $185.2K | Cash | MEDICAL RESEARCH |
THE REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVIS94-6036494 | DAVIS, CA | $150K | Cash | MEDICAL RESEARCH |
COLUMBIA UNIVERSITY13-5598093 | NEW YORK, NY | $125K | Cash | MEDICAL RESEARCH |
RGENTA THERAPEUTICS INC23-7094113 | WOBURNMA, MA | $125K | Cash | MEDICAL RESEARCH |
THE NATIONAL CANCER INSTITUTE01-5208581 | BETHESDA, MD | $124.9K | Cash | MEDICAL RESEARCH |
BOARD REGENTS OF THE UNIVERSITY OF OKLAHOMA73-1377584 | NORMAN, OK | $116.8K | Cash | MEDICAL RESEARCH |
CALIFORNIA INSTITUTE OF TECHNOLOGY95-1643307 | PASADENA, CA | $100K | Cash | MEDICAL RESEARCH |
EPICRISPR BIOTECHNOLOGIES INC82-4177431 | SOUTH SAN FRANCISCO, CA | $100K | Cash | MEDICAL RESEARCH |
UNIVERSITY OF ROCHESTER16-0743209 | ROCHESTER, NY | $100K | Cash | MEDICAL RESEARCH |
USF FOUNDATION59-0879015 | TAMPA, FL | $100K | Cash | MEDICAL RESEARCH |
JOHN HOPKINS UNIVERSITY52-0595110 | BALTIMORE, MD | $86.2K | Cash | MEDICAL RESEARCH |
THE HIGHEST ROAD FILM LLC99-2207841 | GRAPEVINE, TX | $80K | Cash | DISEASE AWARENESS |
THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER74-6000089 | DALLAS, TX | $74.8K | Cash | MEDICAL RESEARCH |
ST JUDE CHILDREN'S RESEARCH HOSPITAL62-0646012 | MEMPHIS, TN | $67.1K | Cash | MEDICAL RESEARCH |
| WHITE PLAINS, NY | $61.6K | Cash | MEDICAL RESEARCH | |
THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES95-6006143 | LOS ANGELES, CA | $45.1K | Cash | MEDICAL RESEARCH |
BOSTON COLLEGE04-2103545 | CHESTNUT HILL, MA | $38K | Cash | MEDICAL RESEARCH |
UPLIFTING ATHLETES34-1986485 | DOYLESTOWN, PA | $10K | Cash | MEDICAL RESEARCH |
NATIONWIDE CHILDREN'S HOSPITAL31-1036372 | COLUMBUS, OH | $9,012 | Cash | MEDICAL RESEARCH |
EMORY UNIVERSITY58-0566256 | ATLANTA, GA | $5,991 | Cash | MEDICAL RESEARCH |
UNIVERSITY OF COLORADO84-6000555 | DENVER, CO | $5,483 | Cash | MEDICAL RESEARCH |
| Total | $7.1M | |||
CAMBRIDGE, MA
$1.9M
PHILADELPHIA, PA
$713.9K
PHILADELPHIA, PA
$500K
GAINESVILLE, FL
$359.2K
REGENTS OF THE UNIVERSITY OF MINNESOTA
MINNEAPOLIS, MN
$339.6K
BOSTON, MA
$314K
UNIVERSITY OF MASSACHUSETTS
BOSTON, MA
$300K
WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY
NEW YORK, NY
$274.9K
STANFORD UNIVERSITY
STANFORD, CA
$250K
VESIGEN INC
CAMBRIDGE, MA
$204.1K
THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGO
LA JOLLA, CA
$194.8K
STEALTH BIOTHERAPEUTICS INC
NEEDHAM, MA
$185.2K
THE REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVIS
DAVIS, CA
$150K
NEW YORK, NY
$125K
RGENTA THERAPEUTICS INC
WOBURNMA, MA
$125K
THE NATIONAL CANCER INSTITUTE
BETHESDA, MD
$124.9K
BOARD REGENTS OF THE UNIVERSITY OF OKLAHOMA
NORMAN, OK
$116.8K
CALIFORNIA INSTITUTE OF TECHNOLOGY
PASADENA, CA
$100K
EPICRISPR BIOTECHNOLOGIES INC
SOUTH SAN FRANCISCO, CA
$100K
ROCHESTER, NY
$100K
TAMPA, FL
$100K
BALTIMORE, MD
$86.2K
THE HIGHEST ROAD FILM LLC
GRAPEVINE, TX
$80K
THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER
DALLAS, TX
$74.8K
MEMPHIS, TN
$67.1K
WHITE PLAINS, NY
$61.6K
THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES
LOS ANGELES, CA
$45.1K
CHESTNUT HILL, MA
$38K
DOYLESTOWN, PA
$10K
COLUMBUS, OH
$9,012
ATLANTA, GA
$5,991
UNIVERSITY OF COLORADO
DENVER, CO
$5,483
Source: USAspending.gov
No federal awards found for this organization.
USAspending.gov tracks federal grants, cooperative agreements, and other financial assistance. Not all nonprofits receive federal funding.
Source: Federal Audit Clearinghouse (fac.gov)
Federal audit data is temporarily unavailable.
Single audits are required for entities expending $750,000+ in federal awards annually.
Tax Year 2024 · Source: IRS e-Filed Form 990Schedule J available
Individuals serving as officers, directors, or trustees of the organization.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other |
|---|
Source: IRS Publication 78, Auto-Revocation List & e-Postcard Data
Tax-deductible contributions: Yes
Deductibility code: PC
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2024IRS e-File | $13.1M | $13.5M | $13.3M | $6.9M | $6.3M |
| 2023IRS e-File | $11.2M | $12M | $12.2M | $7.8M | $6.1M |
| 2022 | $11M | $11.6M | $11.1M | $7.3M | $6.8M |
| 2021 | $7.7M |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
Financial data: IRS e-Filed Form 990 (Tax Year 2024)
Leadership & compensation: IRS e-Filed Form 990, Part VII (Tax Year 2024)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Jennifer M Farmer | Chief Executive Officer | 40 | $165K | $0 | $5,678 | $170.7K |
| Ronald Bartek | President/director | 40 | $110K | $0 | $3,811 | $113.8K |
| Ruth Acton | Treasurer/director Finance | 25 | $51K | $0 | $17K | $68K |
| Paul Avery | Chairman/ Director | 10 | $0 | $0 | $0 | $0 |
| Maureen Juip | Secretary/ Director | 10 | $0 | $0 | $0 | $0 |
Jennifer M Farmer
Chief Executive Officer
$170.7K
Hrs/Wk
40
Compensation
$165K
Related Orgs
$0
Other
$5,678
Ronald Bartek
President/director
$113.8K
Hrs/Wk
40
Compensation
$110K
Related Orgs
$0
Other
$3,811
Ruth Acton
Treasurer/director Finance
$68K
Hrs/Wk
25
Compensation
$51K
Related Orgs
$0
Other
$17K
Paul Avery
Chairman/ Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Maureen Juip
Secretary/ Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Highest compensated employees who are not officers or directors.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Barbara A Tate | Chief Scientific Officer | 40 | $250K | $0 | $5,527 | $255.5K |
| Elisabetta Soragni | Director Of Research | 40 | $115.9K | $0 | $16K | $131.9K |
| Felicia Derosa | VP Fundraising & Comms | 40 | $106.4K | $0 | $12.3K | $118.6K |
Barbara A Tate
Chief Scientific Officer
$255.5K
Hrs/Wk
40
Compensation
$250K
Related Orgs
$0
Other
$5,527
Elisabetta Soragni
Director Of Research
$131.9K
Hrs/Wk
40
Compensation
$115.9K
Related Orgs
$0
Other
$16K
Felicia Derosa
VP Fundraising & Comms
$118.6K
Hrs/Wk
40
Compensation
$106.4K
Related Orgs
$0
Other
$12.3K
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Alex Fielding | Director | 10 | $0 | $0 | $0 | $0 |
| Brigid Brennan | Director/ General Counsel | 20 | $0 | $0 | $0 | $0 |
| Derek G Hennecke | Director | 10 | $0 | $0 | $0 | $0 |
| Dr Holly Hedrick | Director | 10 | $0 | $0 | $0 | $0 |
| Dr James Mcarthur | Director | 10 | $0 | $0 | $0 | $0 |
| Dr James R Rusche | Director |
Alex Fielding
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Brigid Brennan
Director/ General Counsel
$0
Hrs/Wk
20
Compensation
$0
Related Orgs
$0
Other
$0
Derek G Hennecke
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
| $7.7M |
| $9.1M |
| $7.5M |
| $7.2M |
| 2020 | $12.5M | $12.6M | $7.7M | $9.3M | $8.7M |
| 2019 | $7.1M | $7.1M | $7.5M | $4.2M | $3.8M |
| 2018 | $7.6M | $7.7M | $7M | $5.1M | $5M |
| 2017 | $7.5M | $7.5M | $6.8M | $4.9M | $4.5M |
| 2016 | $5.4M | $5.4M | $5.6M | $4.1M | $3.6M |
| 2015 | $5.7M | $5.7M | $5.6M | $4.1M | $3.8M |
| 2014 | $5.2M | $5M | $4.8M | $4M | $3.7M |
| 2013 | $4M | $3.9M | $3.5M | $3.7M | $3.3M |
| 2012 | $3.3M | $3.2M | $3.3M | $3M | $2.8M |
| 2011 | $3M | $2.8M | $3M | $2.8M | $2.6M |
| 2021 | 990 | Data |
| 2020 | 990 | Data |
| 2019 | 990 | Data |
| 2018 | 990 | Data |
| 2017 | 990 | Data |
| 2016 | 990 | Data |
| 2015 | 990 | Data |
| 2014 | 990 | Data |
| 2013 | 990 | Data |
| 2012 | 990 | Data |
| 2011 | 990 | Data |
| 2010 | 990 | — |
| 2009 | 990 | — |
| 2008 | 990 | — |
| 2007 | 990 | — |
| 2006 | 990 | — |
| 2005 | 990 | — |
| 2004 | 990 | — |
| 2003 | 990 | — |
| 2002 | 990 | — |
| 2001 | 990 | — |
| 10 |
| $0 |
| $0 |
| $0 |
| $0 |
| Dr Kathy Mathews | Director | 10 | $0 | $0 | $0 | $0 |
| Dr Sanjay Bidichandani | Director | 10 | $0 | $0 | $0 | $0 |
| Dr Steve Klasko | Director | 10 | $0 | $0 | $0 | $0 |
| Jennifer Good | Director | 10 | $0 | $0 | $0 | $0 |
| Patrick Ritschel | Director | 10 | $0 | $0 | $0 | $0 |
| Thomas Brenninkmeijer | Director | 10 | $0 | $0 | $0 | $0 |
| Thomas Hamilton | Director | 10 | $0 | $0 | $0 | $0 |
| Tony Plohoros | Director | 10 | $0 | $0 | $0 | $0 |
| Warren Huff | Director | 10 | $0 | $0 | $0 | $0 |
Dr Holly Hedrick
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Dr James Mcarthur
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Dr James R Rusche
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Dr Kathy Mathews
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Dr Sanjay Bidichandani
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Dr Steve Klasko
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Jennifer Good
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Patrick Ritschel
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Thomas Brenninkmeijer
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Thomas Hamilton
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Tony Plohoros
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Warren Huff
Director
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0